Overview
In this section, you can learn about peoples’ experiences with multiple sclerosis (MS). Members of our research team talked with 39 individuals who have MS. Due to the COVID-19 pandemic, all of the interviews took place on Zoom from July 2020 to August 2021. People talked about their experiences being diagnosed with and living with MS, their experiences with treatments, and the impact of the condition on important aspects of their lives. People wanted to make their stories publicly available on this site with the hope that they can be useful to you.
Hear what some of the people we talked to would say to others who have been diagnosed with MS:
Introduction to Multiple Sclerosis
Introduction to Multiple Sclerosis
Dina
Find good physicians, ask questions, don't worry, stay on your path that you want, whatever you want to do or are you looking to do next year, five years from now, 20 years from now, plan accordingly that you can still do all those things. I think some of the best advice was when he, my neurologist at the time, had said, “Whatever your first five years are going to look like, it's really what you rest of your life is going to look like.”
Ann
I think the most important thing for somebody newly diagnosed to understand is, and this is the hardest part, is the unknown-ness of MS. Where it's going to be in a year, or two, or three, who knows? For you, individually, who knows? And the unpredictability of it is not easy to deal with.
Mercedes
You have to be your own best advocate. You have to speak up for yourself. And you can't let people tell you what they think that you feel or what they think that they know about you. You just need to voice your – your concerns, voice your feelings, and voice your hurts, your you know positive feelings, et cetera. You just need to be your own advocate and be persistent and speak loudly and clearly so that you're heard.
Dev
With the limitations that you have, try to finish or try to accomplish all those things that you wanted to do, which you had aspired to do, and you could not do it because of a whatever it is, whatever reason it is. Now you know that you have a certain limitation in your life. Now with that limitation, try not to look into that limitation, actually. Try to see what are the unlimited things that you can do within that limitation, actually. And start doing it.
Jennifer
Life doesn't end the day you get diagnosed. It feels like it does, and it felt like it did for a while, but you learn how to live your life with MS. Whatever that looks like, whatever MS brings your way, you have one life to live. These are the cards we're dealt, and there's a lot of life that you can live with it.
We hope you find the information here helpful, inspiring, and reassuring.
This project was made possible by the University of Wisconsin-Madison Institute for Clinical & Translational Research (ICTR) with support from NIH-NCATS Clinical and Translational Science Award (CTSA) 1UL1TR002373 and a strategic grant from the UW SMPH Wisconsin Partnership Program (WPP 4358). The Johns Hopkins Center for Qualitative Studies in Health and Medicine also provided resources to support this initiative.
Limitations of our study
All studies have limitations – it isn’t possible to find every person with something to say on a topic, ask them the perfect questions and then draw exactly one set of conclusions with which everyone would agree. Nevertheless, it is important to explain some of the context surrounding and limitations of the information on this website. We do this so that our audience can understand how to interpret the information on this website and the populations and situations for which insights generated in this study might or might not be usefully transferred to others.
The participants in this study span a broad age range of 20-80 years old and live across the US – from the Pacific Northwest to Florida. Given the importance of clinical recruitment strategies to invite people to be in the study, people who are being treated at (and live fairly close to) the University of Wisconsin-Madison in Madison, Wisconsin and Johns Hopkins Hospital in Baltimore, Maryland are overrepresented in our sample. Our sample, while not totally homogeneous, does not reflect the racial and ethnic diversity of the United States. Similarly, the experiences of individuals who identify as LGBTQ+ are not well represented on this website. The participants who we did include spoke about their experiences with MS fairly expansively—we are confident that we identified people who have important perspectives to share. We are less confident that we have sufficiently included as many marginalized voices as we had intended.